We all want simple solutions to living a healthy life.
It feels like I was born at just the right time for my work in health care. I completed my medical training just as social tools were percolating out to the masses. Motherhood and my practice of pediatrics auspiciously coincided with the bounty of information that technology has distributed, offered up, and shared unlike ever before.
I can search and learn about health wherever I am – at the park or in the walls of my own clinic or home. For me, using my phone, Twitter, my blog, apps, Facebook, activity tracker, and patient online communities to provide health care, consume it, and engage in it is my new reality. It turns out, amidst all the clutter and stress of health care reform and our reduced time with our own doctors I can see clearly that intuitive ways of learning about science wed with thoughtful technology will let us care, cure, and prevent illness and injury like never before.
A survey published today finds that more that 3/4 of moms search online for symptoms. The majority of mothers in the US also look up information regarding their child’s development online, read about a medicine, or track their pregnancy with online tools. I’ve done, or do, all of those things. Don’t you?
I’ve just started a new job in the hospital overseeing a group in Digital Health. Our goal is to rapidly improve the way we serve children and their family’s unique needs in the hospital, clinical setting, and community. I want to help facilitate elegant communication between parents, patients, families, and their clinicians & surgeons when they are outside the hospital or clinic. Reason is: it seems to me that the luxury of our time is the one-to-many communication we have in our pockets. Over 60% of all American adults have a smartphone in their pocket and crowd-sourcing happens at virtual water coolers (ie Facebook) every day. Over 40% of Americans log onto Facebook everyday to listen, lurk, snoop, learn, and vet ideas. Read full post »
I think about the essay Welcome to Holland by Emily Perl Kingsley a lot. Her explanation of what it’s like to raise a child with a disability helps approximate (for me) the unexpected realities that ensue for families who encounter significant pediatric health challenges. Although her essay is not about prematurity and it’s not new, when I sat down to write about World Prematurity Day I couldn’t help but think back to her words and her metaphor. What’s marvelous, of course, is that her essay is built of love so all of us have a chance to understand it.
Sunday, World Prematurity Day, is a day to think cautiously, bravely, and empathetically about the opportunity to improve the lives of children born prematurely, all around the world. When a child arrives early there are obviously significant health challenges not only to survival but to a long life thereafter, sometimes with significant disability. Parents all over world suffer and learn to thrive with and after prematurity every single day. In fact,
Prematurity is the leading cause of death in newborns. Although some risk factors are known for preterm birth, we don’t know very much about the cause.
None of us will really ever know what it’s like to survive and thrive in someone else’s experience. So we share stories, quotes, photos, and moments as best we can to help others understand. As I’ve met and been invited to help care for parents, families and children who are born prematurely, one thing is certain — it’s a journey. It starts often with surprise and evolves individually. The essay by Kingsley is clearly about the journey, not about the diagnosis of prematurity at the time of birth.
Here’s what a colleague and friend, Kim, shared with me about her experience with her twin daughters who were born over three months early: Read full post »
I’m thinking about the high stakes of parenting. Thing is, the more I learn about early child brain development, the more I’m astounded by the opportunity and simultaneous great responsibility it is to care for and nurture young children during their first few years. The reality is: the brain is rapidly evolving as children grow– the connections between brain cells shift and change based on experiences children have. I mean, the brain really just learns how to think as our children age, especially as infants and toddlers.
I’m at the national American Academy of Pediatrics meeting this weekend in Orlando. I’ll be sharing ideas and things I’m learning on Twitter and my Mama Doc Facebook so please follow along if you’re interested. Yet in the immediate I wanted to share a couple things I heard this afternoon about early brain development that can easily change how we think about our children’s lives now.
The first speaker I was lucky enough to hear is Dr Pat Levitt an expert on early brain development from University of Southern California. He shared some fantastic science. Here are 4 quotes from his talk and 5 ideas for what we can do to incorporate science into everyday life while raising children: Read full post »
It was sunny when I landed in Toronto on Tuesday evening so I felt a bit lifted as I sat down into one of the most pleasant cab rides I can remember. The driver was 69 he said, and his claim to good health was avoiding alcohol, shunning cigarettes, and waking up each and every morning to exercise. “Just 30 minutes a day,” he said, “Changed everything in my life.” I held my tongue as he kept talking. The coincidence with the first meeting I’d have while in Toronto was startling. As Dr. Mike Evans and I talked over coffee the following morning, the serendipity of the unified voice in Canada was an unexpected delight. A patient and doctor sharing the same similar thought—one from experience, one from expertise: 30 minutes a day could change your life. If you haven’t seen the video, please watch 23 ½ hours now.
The cab driver was one of 10 children to his mother and father born in the Philippines (5 boys, 5 girls – how’s that for biology playing out) who has lived in Canada for 11 years. All of his siblings were living now in Canada or the US and he’d asked why I’d arrived in Toronto. I’d arrived to, “Share some ideas on using social tools to transform health care,” I said. Maybe it was our deeply political and nearly anthropologic conversation that charmed me. Maybe it was the story I re-read just prior to taking off in Seattle detailing the generous cab drive a man offered a dying woman. Yet Tuesday night in the cab I realized instantly, like I usually do, that although I was there to share my thoughts with a number of people, I would learn potentially much more from Canadians than I would impart. It really is so good to get out of Dodge and see how other people do things. Read full post »
Simply not factual. That’s really all that needs to be said in response to Michael Edwards’ opinion piece entitled “Vaccine Side Effects and Why You Shouldn’t Vaccinate” published in Organic Lifestyle Magazine last week. This is clearly a non-peer reviewed, non-fact-checked online publication that Mr Edwards edits and owns. Fortunately, the magazine is reported to get about the same amount of traffic as my blog so it’s not exactly the Washington Post…
That being said, Edwards’ piece is so egregious I’m unable to hold my breath. Although I’m no watchdog, the dangerous writing demands physician attention partly because it’s been published amidst a noteworthy week in the world of vaccine misinformation:
- A segment aired last week by a local TV station in Las Vegas claimed doctors debating a need for vaccines. The TV station reported false information and misrepresented a chiropractor as a “holistic physician.” There was a noted uproar online, especially when original comments from physicians were, at first, taken down. Here’s more from news watchdog Gary Schwitzer, “Back To School Anti Vaccination Woo.”
- Mr. Edwards published false information claiming families shouldn’t vaccinate. More below.
- Jenny McCarthy’s credibility erodes further as it’s announced she is now advertising e-cigarettes. A pediatric colleague wrote a blog post entitled, “Jenny McCarthy continues tireless crusade to kill us all.”
Back to the piece in “Organic Lifestyle” though. What is so dangerous is not just Mr. Edwards’ misinformation but the way his article appears to the eye. Mr. Edwards published his vaccine opinion in a structure that misleads a reader to believe it’s based in fact. There are sections with headers, subtitles with supposed historical reference, and a list of resources at the end. All the while Mr Edwards warps truth and paints a picture of a fictitious world—one where those diseases now eradicated (small pox) or nearly so (polio) thanks to vaccines, aren’t.
Small pox has been eradicated by worldwide vaccination and thanks to vaccines married with a remarkable commitment from the Gates Foundation, polio is nearly gone too. Read full post »
Today I learned about “smart diapers,” disposable diapers that have QR code indicators with colored sensors ready to detect not only wetness but risk of infection, dehydration, or kidney disease. Only a matter of time, I suppose, that infants’ clothing educates us about their health since it’s been just weeks since TweetPee, the diaper unveiled in Brazil that tweets parents when wet, was unleashed. By report, the smart diapers unveiled today will ring up at the register only 30% higher than a typical diaper. These highly capable diapers may therefore become mainstream whether we like it or not. Worried about your baby’s weird smelling pee and/or worried your infant is getting dehydrated during a bad illness? Just throw on a smart diaper for some insight. Not such a bad idea for a worried parent with a punky baby at 2am.
Formal self-tracking is thunderously augmenting human life as our experience with our bodies and health adapts to available technology. Mobile health apps (think Baby Tracker or Map My Run), self-trackers (think Fit Bit or Up), and devices (think smartphone camera) are continually providing us with new ways to assess and improve our self-awareness. Many Americans (infants to adults) self-track, or are being tracked, without knowing it. Susannah Fox, a researcher studying the intersection of technology and health care, introduced me to informal self-tracking last year when she mentioned the utility of “skinny jeans.” Each pair of skinny jeans out there in closets around America showcases the perfect tracking device for weight balance. We know just where we are when we try them on…
I saw a friend last week who showed me her son’s daycare app–throughout her workday she has constant access to his “feed”–how many ounces of milk he drank, his last dirty diaper, and live, uploaded photos of him on the play mat. These 2013 babies will grow up with a distinct digital timeline. A wealth of data to evaluate and mine, indeed. Yet while the genius of great tracking devices is ease of use and insignificant work for data transfer, the beauty of a smart diaper is that it may potentially alleviate parental concern in minutes.
Some quantified-self devices are clearly amazing. But I have just one hesitation on this one. Read full post »
” Yesterday’s news,” my husband said when I shared a study published, well, yesterday. Yet what we do with yesterday’s information is of course the news today. A JAMA Pediatrics article found that the use of pediatric CT scans rose in the late 1990′s and early 2000′s. Further, research shows that these CT scans can increase risk for future cancer diagnoses. Authors calculated the risk: they estimate that for every 4 million pediatric CT scans preformed annually, some 4800 children will go on to develop cancer as a result. Like many studies published this decade, the study came with warnings for radiologists, pediatricians, and parents. I have tips for parents and doctors included below.
CT scans use radiation and radiation exposure is linked to cancer.
That being said, CT scans also save lives and we’re learning to use them more judiciously. Since 2007, rates of CT scans in children are declining. Don’t let these risks and media reports today cause you refuse or forego diagnostic CT scans your children need. We just have to be strong advocates and smarter about how we use CT scans. Read full post »
The news from Oklahoma today is heart wrenching and terrifying. Often we feel helpless when we’re far away from a disaster. A donation to The Red Cross is a good use of your time.
Today, in addition to providing donations and support for those suffering the loss and tragedy in Oklahoma, do something really productive to counter the sense of unease and alarm we all get. Prepare your own family. Buddy up with a friend and get part of this done today and tomorrow.
I suggest you make a 3-day disaster kit. Here’s an article I wrote for Parents Magazine that details how to make a kit. If the work of storing water and emergency supplies seems daunting today, start with something equally as important:
Make An Emergency Communication Plan
- Teach your child one parent’s cell-phone number or a good contact number for you or your partner. Starting at around age 5, kids are developmentally able to memorize a 7- or 10-digit number. Practice with your child today and tomorrow. Get that number locked in. Experience has taught me to re-visit these numbers as my 6 year-old proves every once and awhile that numbers slip away from memory!
- Designate an out-of-state contact. Chose a family or friend distant from your home who answers their phone regularly. This will be a resource and point person for your family to call during an emergency.
- Choose a safe location. Designate a location other than your home where your family can meet in case of danger or unsafe conditions in your home. This is the kind of place you may need to go there in case of a fire, tornado, or an earthquake. Your meeting place might be a local park, school, or shelter. Walk to the site with your child so he knows exactly how to get there. Read full post »
I met Lowie backstage, about an hour before my own talk earlier this month. I had butterflies in my stomach for all sorts of reasons. I’d read about him prior to arriving and perused the blog he’s written about his daughter’s cancer and his family’s journey during her life and death (you can have Google translate it into English). It was so nice to meet him.
I was really looking forward to his talk although a part of me knew I’d need to brace myself, dig fingernails deep into my legs and let my throat tighten when he started to speak. I knew his words would fill my eyes with tears.
His story detailing Guusje’s voice and needs during her cancer treatment did, of course, cause me to cry. But the images he shared also gave me great hope. Learning about his daughter’s life implored me to share his lessons. I realized we could share the beads of courage widely and put these beads in the hands of other families everywhere. You know we can learn a lot from those in the Netherlands — they did just top this list from UNICEF for child well-being for the wealthiest countries on planet Earth.
Beads of Courage
In the Netherlands when a child is diagnosed with cancer, they immediately spell out their name with beads and then chronicle their courage each and every day in order on a string. Each day of chemo, each radiation treatment, each terrible, bad day (green), and each good day gets documented, strung up in line, and valued. A ledger and journal of the courage a child maintains as they fight for life.
To me it seems obvious that these beads of courage can represent a child’s endurance, perseverance, experience, and will. A hand-held way for a child to see where they are and where they’ve been. Yet reflecting on and re-watching Lowie’s talk I realized that more, these beads can represent the wishes and life experience of a child who courageously fights for life during a chronic or life-threatening disease in a health care environment.
These beads can be a tactile acknowledgement of humanism in health care. Read full post »
Today a Seattle mom advertised on an online parenting community that both of her children had chickenpox and then invited (non-vaccinated) children over for exposure. That’s the invite from 1:19pm today.
It turns out people are still having chickenpox parties.
Part of this makes my head spin. I just don’t get it, despite having had many families in my practice decline or hesitate or delay the chickenpox shot. I don’t think parents know what virus they are dealing with. After I posted this invitation on Twitter, I had physicians all over the country sharing stories (some included below).
Chickenpox can cause serious infection complications and rarely it can be lethal. Before the vaccine was approved and put into use in 1995, hundreds of children and adults died in this country every year from chickenpox and thousands were hospitalized. Although most young children get chickenpox and recover (only left with pox or scars) some children develop life-threatening secondary infections. Some children develop severe pneumonia (1 in 1000 children), some develop brain infections, and some children develop flesh-eating bacterial infections in their scabs that can even be fatal.
There is a safe, highly effective vaccine for chickenpox: Varicella Vaccine.
After I saw the pox party invite this afternoon I became slightly enraged. I mean, there are NUMEROUS children and adults in our community immunosuppressed and/or on chemo that could develop life-ending complications if exposed to varicella. And some families are intentionally exposing their children to a potentially harmful infection. After 2 doses of the chickenpox shot (varicella) 99% of patients are immune to chickenpox. Although some children can get chicken pox once vaccinated, they typically only have a few pox and do not develop severe side effects or die.
The pox party just shows me how much work we have to do to build trust in vaccines and vaccine-safety. My boys have both had 2 doses of the varicella vaccine. I’m thrilled they are protected and unlikely to ever get chickenpox or spread it to a community member who could be more at risk. They likely won’t get shingles, either.
Chickenpox Facts & Stats:
- Varicella shots hurt upon injection (children tell me it really stings). We give the shot twice, once at 1 year of age and once at 4 years of age. The shot can commonly cause arm soreness and lowgrade fever. In less than 5% of children, a small rash develops, often around the site of the shot. That’s a good sign the immune system is being triggered to fight off future infections. The rash that can develop after the shot is not contagious. Read full post »